As I acquire direct experience living with HIBM, I am learning that I must not give in easily and let others do my tasks. I know that when I have stopped doing an activity/tasks/chores, out of fear for one reason or the other I have gotten weak faster.
With this insight into my disease progression, I know I must keep doing chores and other activities with safety in mind. When I do accept help from of family, friends, and strangers I know I have done all I can and, therefore would not be able to do the task. Additionally, I know when I accept help that I am not defeated; it is just that I need help at that time. Also, I know I must pay attention to the doing as there is a delicate balance between overexhausting the muscles (which could cause faster deterioriation) and using them in a way to maintain increased longevity.
I find that HIBM is devastating to my body. At times, it is predictable in its progression, and other times very unpredictable. Usually, I am able to feel and notice the gradual weakening of a certain muscle and at times certain muscle abilities are taken away overnight.
I have experienced this phenomena many times during the course of this disease. For example, I have two steps in the back of my home that I have climbed up and down for the past ten years to go into my beautiful back yard. One day however, I climbed down the steps into my backyard, checked out a few of my rose bushes, and dediced to come back in.
When I attempted to climb up the steps I found my legs/feet would not lift, and my knees refused to bend. At that point, I thought about the strategies I could use to get back into my home. I sat on the top step and picked up my feet with my hands, one at a time placed them on the lower step, and tried to stand up that didn't work, I tried pulling myself by holding onto notches and ledges which also didn't work. I made several attempts using other methods however, to no avail.
After about 30 minutes of trying all the tricks I have acquired over the years I decided to ask for help. I was helped up the steps by someone holding one of my hands and giving me a gentle pull, and I swung one leg/feet to clear the first step and then repeat the motion to get back into my home. After that a grab bar was mounted next to the steps to assist me.
I feel quite sad that I have lost the ability to climb steps without someone's help and know that I have no control over this. Proactively, when I exercise, I continue to practice climbing steps within parallel bars with hopes of reviving my stair climbing ability. I am very fortunate to have an extraordinary and intuitive coach who helps me with this.
Although, it feels like I go through a daily "battle" with my body by coaching and coaxing my limbs to cooperate, I am thankful that I can do some things. My intention is to continue walking, no matter how strange my gait may look. I strive fervently to remain independent eventhough it may take me an hour to do something which previously I was able to do in 15 minutes.
HIBM is a disease that manifests itself at the prime of one's life and ekes away at one's independence, productivity, physical abilities and tests one's self confidence. There is hope and I am very encouraged with the progress of the clinical trials and other research that are being done.
2 comments:
Hi Tara, I know exactly what you mean when you say you were able to do a task one day and the next you were unable to. I live on the second floor and have a stairlift, it is not long enough so the last 2 steps I have to do myself. I would swing my right leg to clear the steps while holding on to the rails and raise my left leg, it was difficult but I managed. But now I have to have someone lift my right leg up because I am having a very difficult time clearing the step, I can still lift my own left leg. It's so frustrating, I like to go outside on nice days in my backyard but I start to think about going up those stairs, "is it worth the struggle", and sometimes I do talk myself out of it because it is too emotionally and physically draining.
I'm like you, if I can do something without taking a chance of hurting myself I will do it and I will ask for help when I need it. I've been called stubborn, I call it determination.
I'm thinking of doing a short video of myself around my house doing everyday tasks.
Lisa: Thanks for your comment and insight. I agree it's determination not stubborness for you to keep doing things. When you make the video, it may be helpful for others to see. I would love for you to post it on this blog.I hope you are well. Take care.
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